Lucy May born 30th May 2004 suffered oxygen starvation ( Hypoxic-Ischemic Encephalopathy or HIE ) at birth and as a result has Athetoid Cerebral Palsy, Epilepsy, Visual Impairment and Quadriplegia. Lucy's struggle through life involves constant medical care, therapy and the support of those close to her.

Sunday, 27 April 2008

We all piled in the car on Saturday morning and set off to spend the weekend with my sister’s family. It is great having Lucy’s big Motorbility car which easily holds all her stuff and we even had space for Joshua’s bike which he was really pleased about. Lucy is so much better in the car these days and she was calm and content for most of the 3 hour journey. In the past I can remember making the same journey when she cried and screamed for the entire duration. Thankfully those days seem to be over, although with Lucy I have learnt to never take anything for granted.Joshua and Lucy were not short of attention for the whole weekend. Lucy even made friends with their new cat who spent a long time trying to work out what Lucy was. Joshua spent the whole weekend outside playing on his bike and making new friends which was great for him. He so rarely gets the chance to “play out” at home. Lucy’s cousin, Samantha took her out for a walk in her buggy which was fine because they live in a relatively quiet and safe village. I was just happy for Lucy to be involved with the other kids. After they had been gone a while, I went to look for them and found them both at a small play ground near the house.There was a whole group of children playing and messing around. Lucy was right in the middle of it having the time of her life.It was wonderful to see how naturally they involved her in what they were doing. To me she had gained a certain amount of independence, out playing with her friends on her own without her parents or any adults. Of course we were keeping an eye on her but she didn’t know that. I thought about her dreaming about her day when I put her to bed in their newly converted attic.She complained a little because she wasn’t ready to go to bed and wanted the fun to continue. Is wasn’t long before Samantha, James and Joshua had dragged makeshift beds up into the attic so that they could keep Lucy company.Lucy had her first proper sleep over.They all stayed up late chatting, giggling and generally carrying on and coincidently Lucy was completely content the whole time. Eventually all the excitement and fun took its toll and Lucy could not keep her eyes open.It was such a great day for her and for Joshua, it’s just a shame they don’t get the opportunity more often. For Lucy, children are some of the best therapists because they do all the right things so naturally, without thought and without prejudice. This weekend Lucy was accepted as just another kid.....brilliant!!

Wednesday, 23 April 2008

Last week we had a visit from Rachel Lucy's Occupational Therapist. Rachel has just completed an eight week therapy course at The Bobath Centre (www.bobath.org.uk) in London and has returned with lots of fresh ideas. She was keen to review positioning with Lucy and in particular introduce side lying. Up until now Lucy has spent a lot of time simply lying on her back. When she goes to bed, because of the way her sleep system is, she can only lie on her back and it is not always the most comfortable or beneficial position. She struggles sometimes to clear her throat in this position especially when she has a cold and is producing a lot of mucus and saliva. I also think that lying on your back is not always the most comfortable way to sleep. We have known for a while that Lucy enjoys being on her side, it is just difficult to keep her in that position. Rachel brought with her another mat to use with the spare wedges from Lucy's sleep system so that we can introduce side lying on her wedge to get her used to it before we introduce it for sleeping.As far as I understand the Bobath therapy concentrates a lot on positioning and using different positions to stimulate movement and dexterity. Rachel explained to us that she thought Lucy was very clever and aware of her surroundings and that she wanted to build on that by challenging Lucy to use her body more. In the side lying position Lucy has much more freedom to use her arms because they are naturally brought forward to a position where we can easily stimulate her touch and feel.She is also free to use her legs in a different way and she showed us this immediately by kicking and moving them which she does not always do.It is also good for her head position. Lucy has always had a tendency to lean and push back which results in her head lolling backwards. On her side it is easier to position her with her head forward and we can give her things to look at which challenge her to look down as well as up.It is always nice to have such a positive visit but it was really important and moving to hear somebody describe Lucy as clever. We have always thought it of Lucy but there are not many people that can see past her disabilities. Probably without realising it Rachel gave both Dawn and myself a huge boost by what she said. It is just something we don't hear very often. Lucy has huge potential to progress and needs people like Rachel in her life to push her and challenge her, to see the bright little girl inside her disfunctional exterior and help her to express herself in new and different ways.Lucy has taken to side lying very well and has been happy to maintain the position for long periods of time. It is giving her a whole new perspective, allowing her to see things in a different way. As you can see from the photo above, I don't think she will have any problems sleeping in this position.

Saturday, 19 April 2008

It is about 6 weeks since we began to realise the benefits of receiving direct payments. We have been really lucky to find Helen who we can completely trust to look after Lucy and although the direct payments only provide 5 hours care per week, it is making a huge difference. We know now that we are regularly going to get time to do our own thing and to have a break from the usual routine. I think it is already having an affect on our attitudes and outlook as we are being allowed to relax. It is good that we can be flexible in the way we use the hours and we have Helen to thank for that. Some weeks Helen has done two evenings to cover bath and supper and other times we have used all the hours at once so that we can get out and spend time alone with Joshua.

On Saturday Helen took Lucy out for the whole afternoon which gave us the opportunity to have a day out with Joshua. Joshua found a place nearby on the internet called Diggerland (www.diggerland.com). As the name suggests it's theme is diggers and construction equipment, a real boy place.Joshua had the time of his life and really got his moneys worth. We would simply not have been able to do this in the same way if it was not for our direct payments and Helen. In the past everything would have been arranged around Lucy's timetable of feeding and Joshua would have had to accept that we would be stopping at regular intervals to sort her out.As it is now we have the time to give him our full attention and let him know that he is still very important. We have probably lost sight of that recently and have allowed ourselves to think that he copes very well and in reality this is not always the case. I asked Joshua to write a little bit about his day on Saturday and this is what he wrote:

"This morning we were looking for something to do when Helen/Mary took Lucy to Leeds. So I had a look on my computer for something to do, and I found a place called Diggerland, in Castleford. Helen arrived and we set off. Once we had arrived we took off around Diggerland. Even though it didn’t look much at first we ended up having a great time at Diggerland. It was really nice to have some quality time with my parents as I don’t usually have time with my mum and dad when Lucy is around, I sometimes feel as though I’m fading into the background and Lucy is standing out more, because I usually have to go and do my own thing whilst Lucy gets all the attention."

I asked him to be honest and I am glad he was. It is a constant balancing act and so difficult at times to get right. Joshua rarely shows his feelings but we know that he is a thinker. He carries a lot around in that young head of his and he shouldn't have to. I am just so pleased and relieved that we have the opportunity to concentrate on him more so that he doesn't feel excluded or sidelined because of Lucy.This is face that we need to ensure doesn't change.

Tuesday, 15 April 2008

Back in January I had the uncomfortable task of choosing the design for Lucy's new splints ("Stepping In" Blog). The new splints have arrived and the verdict is yours.

These were the old ones.These are the new onesDid I make the right decision? Let me know by registering your vote in the poll on the right.

We also have just received Lucy's new covers for her Squiggle chair. It has transformed the chair into a vision in green.It is nice for the chair to be looking clean and new again because the pink covers have started to look a bit over used. To say that the chair is used for absolutely everything it has actually worn quite well. I think Lucy will like the change in covers, all girls need to accessorize! Changing the covers is a bit of a challenge but between us, Dawn and I eventually managed it. Today was the first day for Lucy to show off the new covers at school. I imagined her sitting in the car in excited anticipation of all her school friends seeing her with her shiny new green seat covers.I suppose we shouldn't encourage Lucy to show off but she was full of herself this morning.On the way to Lucy's classroom yesterday we stopped to chat with Sammi. Sammi is the the schools Family Liaison Officer as well as having a reputation of being an excellent cook.She always keeps me updated with photos from the school but has also just sent me a whole lot of her own curry recipes. I am thinking of trying them on Lucy as well. Helen (Mary Poppins) suggested that giving Lucy food with stronger/more spicy flavours may be more stimulating and help with her chewing and swallowing. Anything is worth a try plus it gives me an excuse to make Indian food more often.

After a long morning at school and a wheelchair assessment this afternoon Lucy was ready for a nap.She lay for a while smiling at herself in the mirror before finally dropping off to sleep. She had forty winks before it was time for bath, supper and bedtime. Joshua wanted to take Lucy up to bed and insisted on carrying her all the way upstairs.She is really getting a little heavy for him now but he is so careful with her and it is just lovely to see them together.Joshua tucked Lucy in and made sure she had her favourite cuddly toys within reach before giving her a cuddle and kissing her goodnight.

Sunday, 13 April 2008

I have just returned from a week working in South Africa which is why I have not blogged for a while. (Yes, I did fly BA and Yes they did leave my suitcase behind. Fortunately I did get it back 4 days later) I have got quite a bit of catching up to do.

It was school holidays the week before I went to SA and Lucy was involved in a school holiday play day. Sammi, the schools brilliant family liaison officer, sent some photos of the day while I was away. It is great that they always take photos so we can see what Lucy did. They went to a park in Leeds which has a "Tropical World". The children are always very well looked after and Lucy had a ball.I had a little chuckle to myself when I knew they were going there because the paths a quite narrow and I can just imagine what chaos a train of 13 or 14 wheelchairs would have caused. So what, I say, let the un-disabled people have access problems for a change.Helen was heavily involved in the day which was really good for me because we arranged for her to bring Lucy home at the end of the day which meant I could get a full days work in. I could tell that Lucy had had a good time because she was shattered at bedtime although it looks like she might have managed to get a little nap in during the day.Lucy went back to school while I was away. Dawn had bought her some new school clothes including a really cute cardigan.Not sure why she was in a deck chair but I am guessing they must have had a beach theme in the classroom last week. Lucy was also trying out a new chair for most of the week. The suppliers had brought it into school so she could get plenty of time in it, to really test it before we make the final decision on which she will have. The unique feature of this chair is that when Lucy pushes back, as she often does, the chair will give a little to allow the movement and then rebound back into position when she relaxes. Most chairs are simply fixed forcing a certain position. There are two schools of thinking on seating/support but we are going to go for the one which Lucy is most comfortable in because she will tolerate sitting in that for longer. She will need to spend more and more time in a chair as she grows and becomes less manageable.It has been a while since I have had to spend a whole week away. I guess it is just part of the job but I really missed Dawn and the kids. It was lovely to get back and find that Lucy still recognised who I was. I could just see it in her eyes. I wish I could bottle that feeling and take it with me.Dawn's mum was visiting from Portugal so when I got back on Saturday we all went out and spent a few hours eating and drinking, passing Lucy around while we finished our meals in turn. Lucy was very good but still much prefers sitting on knees rather than in her chair. In the end the socialising and cuddling were all a bit too much for Lucy and she succumbed to the sleep fairy.Not seeing Lucy for a whole week allowed me to see when I came back that she has changed. She is no longer a baby. I noticed it straight away and now I can't think when it happened, but what I saw when I came home was a little girl. She has grown up and is no longer that little baby that I have been so protective of. Its probably a normal feeling but it made me feel a little sad to realise that that first stage of her life has passed. At the same time I feel so proud of her, she overcame so much as a baby. Writing this down I realise that this is just the same way I would feel about Lucy if she had lead a normal life but because she hasn't, I believe the feelings are magnified and the developments become so much more significant.

Lucy

About Us

My name is Neil and I have 2 children Joshua and Lucy. Lucy has severe Cerebral Palsy and Epilepsy. She is unable to co-ordinate normal movement or communicate in the conventional way. She is a beautiful little girl who has had more than her fair share of bad luck and I am are immensely proud of all she has achieved.Email Me here